Cerebral Palsy Nonprofits and Academies Support CPRN PCORI Application

As the Cerebral Palsy Research Network (CPRN) and Richard Stevenson, MD, of the University of Virginia finalize their application to the Patient-Centered Outcomes Research Institute for a large scale cerebral palsy trial, we have received tremendous support for the study from both the cerebral palsy nonprofit organizations and the provider membership organizations. The membership organizations represent a significant part of the “delivery system” for care and have agreed to help disseminate the findings from the proposed study with their membership.

Similarly, the nonprofit organizations provide access to a very broad array of patients, parents and caregivers for children with cerebral palsy that might benefit from the study findings. The study is directly aimed at providing more definitive answers to patients, parents and providers as to what treatments work best for which patients.

Many of the societies and academies whose members treat children with CP have agreed to disseminate our results including:

The nonprofit organizations that have agreed to help disseminate our results include:

These stakeholders are joined by a number of provider and payer stakeholders that are part of the “delivery system, ” including perspectives from members of the delivery system and administration help assure that the study and its results are adopted. The delivery system stakeholders include:

  • Jon Davids, M.D., Orthopedic
  • Surgeon, Shriners Hospital of Sacramento
  • Vedant Kulkarni, M.D., Orthopedic Surgeon, Shriners Hospital of Sacramento
  • Nancy Murphy, M.D., Medical Director, Comprehensive Care, Primary Children’s Hospital
  • Robert Sawin, M.D., Chief of Surgery, Seattle Children’s Hospital
  • Lisa Thorton, M.D., Physical Medicine and Rehabilitation, University of Chicago
  • Ann Tilton, M.D., Pediatric Neurologist, Children’s Hospital, New Orleans
  • Marion “Jack” Walker, M.D., Neurosurgeon, Primary Children’s Hospital
  • Brad Wilson, C.E.O., Blue Cross Blue Shield of North Carolina

We greatly appreciate the level of support we have received from the leadership of the various provider societies, the nonprofit organizations and the stakeholders in supporting this study endeavor.